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Waiting For Transplant
I was born with an atrial septal defect and developed pulmonary hypertension. This was not diagnosed until I was nearly 30. From the age of 20 I started noticing that I did not have the energy that I used to have. I had always been fit, healthy and athletic. I participated in all competitive sports, e.g. track and field, hockey, gymnastics, and so forth. I considered myself a sporty person, as did all my friends.
When I was very young, I can remember lying on the living room floor, reading the newspapers in South Africa, and the information on the first heart transplants. We were all amazed in those days and for some reason as a kid I was particularly interested in reading everything about the first transplants ever. Then, in my early 20's, I was lucky enough to meet, Dr. Christiaan Barnard's daughter, Deidre, who was temporarily living in Durban, and we became friends at that time. I had no idea, that I had a hole in my heart or that my health would deteriorate as it did over the next 10 to 15 years. At age 36, I was told that if I did not have the transplant I would not see 40 years of age.
Coincidence or not, I was lucky enough to be accepted by Prof. Yacoub (a dear friend of mine, Sylvie, had worked with Prof. Yacoub in the theatre at Harefield when he first started his interest in heart and lung transplants. Sylvie (who saved my life several times in SA), accompanied me from South Africa to Harefield to care for me while I waited to meet the team. My sister had traveled to South Africa to take care of me, and returned with us at the same time.
Our first visit was to a clinic on the outskirts of London, where we were scheduled for our appointment at midnight. We arrived early and checked in. Around 1AM we were told we would have to come the next evening as the Professor had been delayed. We returned the next evening at midnight, and the nurses advised us that since there were some small children waiting, they would see the children first. I am not sure what time we eventually saw the medical team, but it always struck me that these must have been some unbelievably dedicated people to complete their busy days, and consult right on through the wee hours of the night.
The team reviewed my papers and I was told that they would contact me, that I appeared to be a suitable candidate for surgery, and that the hospital would see me soon. So began my 22 months of consultations, medical treatment and the long wait. Whilst waiting for my surgery I was one of the lucky patients to have Dr. Yacoub check on. I was so fortunate to meet the best medical team in the world. I was advised that it was all going to be worth the wait. They reiterated that it is not the quantity of life but the quality of life that counted. Not to bore you with two years of waiting… I was motivated to soldier on and wait for my organs. I was once again inspired through the kindness of the people attending to me, my transplant co-coordinator and the entire staff at Harefield.
While waiting for my organs, I met my husband Mike, an American working abroad. He
On June 24th 1994 I arrived home from working at the local hat shop. I was totally exhausted and had fought off a fainting spree most of the day. I told my mom and family that I was going to bed. I already had my suitcase packed and tucked under my bed. Strangely enough, it had been packed for over a month. Just as strangely, earlier in the day, I had spoken with my boyfriend about my disappointment in missing out on a flat that I had been trying to let. He told me not to worry because "everything happens for a reason." I said a prayer to St. Jude, hooked up my oxygen tank and went to sleep.
The phone rang around 11PM on the Friday evening. I woke and immediately knew that this was the night. I heard my brother talking quietly on the phone. I jumped from bed, and told him I was ready. He tried to relax me and suggested I had a nice long bath. I told him I was relaxed, I was fine and I was so ready for a transplant. I made my calls to my sisters and a few close friends who I had promised I would call. I called America, to let Mike know but had to leave him a message. Then we drove up to London, an hour's drive. I remember my family were so stressed and worried and I was telling them to relax, that I was ready and that if for any reason I did not wake up, I would not know, so why should they be worrying anyhow. I was reassuring them, that in fact my life was not much without the transplant. Every breath I took sent pain through my back and shoulders, and that I would be so much better off, no matter what. I told them that if I woke up, I knew I was going to be fine.
Once at Harefield, I suddenly was energized and walked every step to the pre-op area to be medicated. I called Mike a few more times from the call box never really getting him, but I was fine. When I was wheeled to theatre, I was as happy as could be. I was excited. I was exhilarated. I wanted my new organs.
Surgery took 6 hours. When I woke up briefly I asked them to tell my mother. They said they had and I should rest. My mom said when she got the phone call she knew I was telling her I was going to be fine. I slept and woke up a few short periods, but remembered seeing my mom and sister briefly, and then the next time I did, I saw Mike. He had flown from America and the smile on his face was larger than life itself. I knew I was going to be fine. By Monday I was in the ward, and was in the hospital for just short of two weeks. I remember them getting me up to walk on Tuesday. I showered. I could touch my toes. I could shave my legs, unassisted. Theses were things that I had not been able to do for years. I walked the gardens of Harefield. The food did not taste what it should have tasted like (the cyclosporine, of course), but I had an appetite and I basked in the sunshine pouring through my windows. It was summer and the windows were open. I can remember looking out and thinking "God thank you for blessing me with this Miracle of Life".
Whilst in the hospital I wrote to my donor family. I thanked them for my second chance – a gift that not everyone in the world gets. I heard Dr. Khagani had performed my operation and was thrilled to meet him soon after my operation. I traveled home and returned for my weekly, then bi-monthly, then monthly appointments. I ran through the halls of the hospitals. I was so happy to be alive. I was 38. I was alive. I flew to America to spend Christmas with Mike in 1994, knowing my life was going to turn around for ever. My donor family responded to my letter and we started a lifetime of correspondence from afar.
After a year of monthly check ups Mike proposed and we were married at the end of 1995. I returned regularly for the first 10 years to Harefield. My security blanket to good health. I also found a medical team, at Johns Hopkins in America, that would keep me on the Harefield program and never changed my medication without approval from Harefield. Over the last 13 years, knowing that I have the same cardiac surgeon and pulmonary surgeon I spend more time at Hopkins than at Harefield. My specialist in America has been to Prof. Yacoub's seminars when he was in America, and he stands in as much awe as I do.
My only warning that I would pass to other transplant patients is about the sensitivity to sun damage. I see a dermatology specialist at Hopkins who specializes in transplant patients with skin cancers from sun damage. I would remind all patients to wear sun block every day of your life.
Annually, we have a celebration of life party in America, on the last Saturday in June. In 2003, following years of corresponding, my donor's mother, Maria, flew to America to meet with me and visit. It was a wonderful experience. We have the celebration of life party every year, and every year some 200 (or so) friends and family drink a toast to Dr. Khagani. I am hoping in my lifetime that we can have him present at one of our celebrations to accept the honor in person.
I miss Harefield, and everyone there. I shall be eternally grateful to Prof Yacoub, Dr. Khagani, the entire transplant clinic staff, the Harefield Hospital community, and my donor family.
Following is an extract from our invitation for June 2008, my 14th transplant celebration of life.
Peta Cappello xxx
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